TRANSITIONS ONLINE: No Wheelchairs Allowed

by Galina Stolyarova

Alexander Mokin had his birthday party all planned out. He booked a table for four at Galereya, a popular restaurant and club in downtown Yekaterinburg. He’d chosen to celebrate turning 27 years old quietly, with just his wife and two friends. The restaurant manager was courteous on the phone, and the arrangements were in place. Until the group arrived at the venue.

When they turned up the management refused entry to Alexander. He failed even to get past security, or “face control.” That kind of thing happens every day in clubs when known troublemakers are turned away. But there was no such reason for Galereya to exclude Mokin.

The club’s duty manager, a pleasant-looking woman, explained the situation in uncompromising and insulting terms.

“You’re an invalid. You look ill and you would scare our customers away,” Mokin said she told him. “It’s up to me to decide who to let in, and I don’t see you fitting in here. Your appearance would only make the other guests uncomfortable.”

Mokin has used a wheelchair since his lower body was left paralyzed by an accident two years ago. On a hot summer day, he plunged into a lake to cool down. But the water was too shallow and he hit the bottom, severing his spinal cord.

Mokin said he was especially taken aback by the ugliness at Galereya because he had made it clear on the phone that he uses a wheelchair. Another manager had even offered him a table he said would be suitable for wheelchair users.

“It’s not the first time that I’ve been turned away from cafés for the same reason,” Mokin said. He says staff at such venues have often told him openly that his wheelchair would scare other clients away.

It seems to be a common attitude in Russia that people who are obviously sick or handicapped should be banned from places that others visit for fun, and that sitting next to a disabled person is enough to ruin one’s appetite. So much for acceptance, cordiality, and good manners.

Russia’s disabled people are often too poor to go out, and not all who need a wheelchair even have one. At the same time many of those who do have wheelchairs have to stay at home much of the time because no carer is available to accompany them on excursions.

“On only one occasion have I received apologies from the director of a café where a security guard had not let me in. They even offered me a frequent visitor card, but after such humiliation I couldn’t accept it,” Mokin recalls.

The management of Galereya eventually issued a written apology to Mokin, but only after a group of about 20 disabled people in wheelchairs held a protest outside the venue. To the staff who turned Mokin away, that must have qualified as an unpleasant sight for the club’s guests.

Yekaterinburg’s ombudsman has urged Mokin to sue the club. A high-profile court ruling might help to change some of the primitive attitudes toward disabled people that are widespread in Russia. Society seems largely determined to ignore disabled people if it can, almost to obliterate them from its consciousness.

Another troubling case concerns a young cancer patient, 18-year-old Marina Barlukova, who was due to fly from Moscow to Vladivostok after a course of chemotherapy in the capital. One of Marina’s legs had been amputated, and every move for her was fraught with pain.

She and her father booked with a regional airline, Vladivostok Air. Three seats were required for Barlukova because she had to be horizontal. But airline staff refused to allow her on board on the grounds that she looked ill and that the airline could not assume any responsibility for her – even though she had the necessary medical clearance to fly.

The airline demanded that Barlukova return to the clinic where she had been treated and obtain a document from doctors guaranteeing that she would not become ill or die on board. According to Barlukova’s family, the doctors, although shocked by the airline’s treatment of their patient, complied. However, the airline took two more days to make its own bureaucratic arrangements, choosing to get her trip approved by senior managers.

Vladivostok Air then charged the young woman and her father for the initial flight, from which it had barred her. In the end, Barlukova flew home with another airline, S7, which did not raise any problems. In more than one sense it was the most painful journey of her life.

The Russian tendency to discriminate against people who are sick or disabled, despite their pleas for help, is an important blemish on our country which we need to combat and confront, and which we must never tolerate. Are we ever going to arrive in the 21st century and change our ways?

The family of Marina Barlukova, treated so shabbily by an airline, are considering suing the offending party, just as Alexander Mokin is being urged to do by the Yekaterinburg ombusdsman.

If progress is to be made, court cases and publicity are certainly important. But a more complete and permanent change in mentality can be achieved only when young people are educated and brought up in a spirit of equality.

A good place to start would be our schools. It is time that disabled children were allowed to attend the same classes as other pupils and be accepted by them as equals.

And all of us need to vote with our feet – to boycott and, if possible, blow the whistle on any restaurant, café, or other business that infringes on the most basic human rights of the disabled.

In June, Marina Barlukova will have to fly to Moscow again for another course of chemotherapy. She has not yet chosen an airline.

Galina Stolyarova is a writer for The St. Petersburg Times, an English-language newspaper.

Disabled to get extra $212 million

DISABLED South Australians and their carers are amongst the biggest winners in the State Budget, with an extra $212 million promised by Treasurer Jack Snelling.

Mr Snelling today announced the increased funding would be spent on accommodation and support for disabled people – and improved respite for their carers.

“The demand for disability services is increasing and the State Government is reforming the way we provide support to people with a disability,” he said.

Mr Snelling said $61.5 million would be spent by the SA Housing Trust on building new community-based homes for disabled people while another $106.1 million would boost support for the disabled and their carers.

Disabilities Minister Ian Hunter said the government was committed to a major reform of the disability support system.

“The new disability system in South Australia will be a rights-based system, as opposed to the current welfare based model, and will provide people living with disabilities more choice and control,” he said.

“We are reforming the system from a crisis-management approach to one focussed on early intervention and the ability for people to make decisions about their care.”

Mr Hunter said the creation of additional supported accommodation for disabled people needing urgent help remained a priority.

Work also would intensify on the introduction of the National Disability Insurance Scheme (NDIS), with $20 million committed to its launch within South Australia.

The first four launch sites around the country were still the subject of negotiations with the Commonwealth, with the State Government pushing hard for South Australia to be chosen.

Mr Hunter said the new system would enable disabled people to have more choice about the services they received.

“It will mean the Government is no longer pouring money into the crisis end of the system but providing more effective support where it is needed,” he said.

Meanwhile, the Office of the Public Advocate – which manages guardianship issues for people with intellectually disability or mental illness – will receive another $2.1 million over the next years to manage an increasing number of cases.

Disability Rights Advocates Head to Albany

By: YNN Staff

Some disability rights advocates from Rochester will spend the day in Albany to push for Governor Cuomo to implement long term service options for the disabled.
The Center for Disability Rights works on behalf of people with all types of disabilities. The goal is to help them successfully live independently.

About 40 disability rights advocates are heading to the State Capitol to push to reform Medicaid’s long term care provision.

CDR says New York State committed to implementing the Community First Choice Option that provides individuals with support and programs to live at home. CDR says the state has not moved forward with the plan.

“What they’ve told us is that it’s delayed because they’re concerned that they won’t be able to make a maintenance of effort requirement, so they’ve been cutting home and community based services without considering the implications for the Community First Choice Option. We’re concerned that it was just short sighted, that by cutting those services, we’re going to lose all sorts of additional federal dollars that could be coming in and people won’t have the option to stay in their own homes,” said Bruce Darling, Center for Disability Rights CEO.

Carmen Hernandez has been in a wheelchair since she was six years old. She says home is where she wants to be.

“I’m going because this is my life. I want to live in my home. I want to die in my home. And we should have a choice on how we live our lives,” said Hernandez.

The state maintains that there is a delay of final regulations and that there are some questions about specific aspects of the options.

Seniors in Ontario nursing homes are being beaten, neglected and even raped by the people hired to care for them, a Star investigation has found.

In one case, a helpless 71-year-old Toronto woman with advanced dementia was raped in her bed, allegedly by a male nurse identified months earlier by other staff at the home as someone who regularly disappeared on shift “without explanation.”

A staff member discovered the male nurse in Danae Chambers’ room in the middle of the night. Chambers, a renowned portrait artist, lay sideways on her bed and the male nurse, pants dropped to his knees, stood against her bare buttocks, according to a provincial inspection report.

“I trusted them to take care of her,” said Chambers’ close friend and guardian, Anna Schrofer. “I tried so hard to find the right home for her and everyone said this was the best.”

In another case, this one in a North York nursing home, a staff member first physically assaulted a resident, then warned a witness “not to tell anyone,” a provincial inspector found. Two staff members who were aware of the abuse didn’t report it.

A worker at a Port Dover home “cuffed” a resident on the head, another inspection report said.

There were at least a dozen cases in which the attacks were so serious, ministry inspectors determined the home should have immediately notified police. But the homes delayed and sometimes never bothered calling the cops — pointing to a culture of secrecy in some nursing homes

Seniors advocates agree that cases of abuse in long-term care are under-reported. According to the reports the Star obtained, more than 10 residents in Ontario each month are punched, pushed, verbally abused or sexually assaulted.

In the majority of the known cases, the abuser was a staff member. In others, the assault was resident on resident.

Eight years after Star stories documenting problems brought a provincial vow of improved care, the same problems exist.

The problems continue because the nursing home system is taking increasingly sick and demented residents but lacks the money for increased staffing levels to provide a minimum amount of daily care.

Personal support workers who do the majority of hands on work are not regulated and have little training to manage residents with complex needs.

What has changed is the Ministry of Health and Long-Term Care’s inspection system. Just over a year ago the ministry rolled three confusing nursing home acts into one piece of legislation in response to a 2003 Star investigation.

The new inspection system — with a focus on resident complaints — is now uncovering hundreds of cases of assault and neglect.

The Star obtained more than 1,500 inspection reports carried out since the new rules began. Each inspection was done in response to either a complaint of poor care or the nursing home’s own reporting of a critical incident such as an alleged assault or broken bones from a fall.

The system relies on homes volunteering negative information about themselves or residents speaking out, even though many fear repercussions.

Of 1,500 inspection reports (the Star obtained about 70 per cent of reports from the last year), serious problems were found in 900 cases. Of those, roughly 125 were abuse related, 350 revealed neglectful treatment of a senior and the remainder found other types of poor care. There are 627 homes in Ontario with 77,000 residents.

Today’s story focuses on abuse.

In the case of well-known Canadian portrait artist Danae Chambers, police have laid a sex assault charge against a male registered practical nurse, a job that requires two years of college training compared to a current registered nurse’s four-year university degree. The case is before the courts.

Back in the 1970s and 1980s, Chambers painted elite political, business and literary figures. Former Prime Minister Pierre Trudeau was one of her subjects.

Earlier, she studied art at the University of Oxford and for many years lived in Menton, in the south of France, where she created oil paintings of the region’s lush gardens.

Chambers began showing signs of dementia in the early 1990s and by 2006 was a resident of Castleview Wychwood Towers, a City of Toronto-run nursing home.

Her brother in British Columbia asked her close friend, Anna Schrofer, to be power-of-attorney. Schrofer visits her regularly and uses money from the sale of Chambers’ paintings to pay for a private worker to provide extra care. Chambers is divorced. She has a son whose whereabouts is unknown to the family.

“This is a woman who can do absolutely nothing. She cannot speak, she cannot stand, she is totally reliant,” said Schrofer.

Chambers lives in a tiny, shared room. Though victims of sexual assault are not usually identified in the media, Schrofer and Chambers’ brother, Parker Williams, said they wanted her name used to draw attention to the dangers vulnerable women face in nursing homes.

“It was shocking, improper and it should be stopped,” Williams said.

In Chambers’ case, the provincial inspection report reveals that the home was warned by a staffer two months before the alleged attack that a male registered practical nurse who was supposed to be watching “high risk” residents in one area was “returning late from breaks and (had) unexplained absences from his assigned duties.”

According to ministry reports, he was discovered in Chambers’ room on April 4.

At 3:05 a.m., a staff member saw a male nurse standing at Chambers’ bedside, his pants halfway down his legs.

The man was standing behind Chamber’s exposed buttocks, which were “positioned at the edge of the bed.” His body was “facing (Chamber’s) buttocks.” The bed had been positioned at a height between his hips and waist.

According to the report, her back and breasts were exposed; fluid was coming out of her mouth and her eyes were open.

Chambers’ diaper was lying on her wheelchair seat. Three disposable gloves and two wet face cloths were on the floor.

Chambers’ friend, Schrofer, said the worker who witnessed the alleged assault reported it immediately. Schrofer got a call from police early in the morning and she went to the home to comfort her friend.

Leonid Kozlov, now 46, is facing a sex assault charge. He had worked at the home for about five years.

The home’s administrator, Nancy Lew, said she could not comment on the alleged assault, nor on the earlier warnings, because the case is before the courts.

The ministry inspector’s report concluded that the nursing home failed to investigate the earlier allegations.

Ministry officials prepare two very different reports of an incident. One with detailed findings is given to the home’s management. Another version, typically sanitized of key details, is posted in a public place in the nursing home so families and prospective residents can see the kind of care offered in the home.

In Chamber’s case, the posted report is a sanitized version. This happens all the time, the Star found.

The public report does say the home “failed to protect an identified resident from abuse” but does not go into detail, saying only that “a staff member was found on an unassigned unit.”

The home’s version gives precise details of the alleged assault and the previous written warnings. The ministry refused to give Schrofer a copy so she found a lawyer at the Advocacy Centre for the Elderly who got it for her.

Most of the 1,500 reports the Star obtained for this story were the sanitized versions.

Reading them, it was impossible to know how many of the abuse cases were actually sexual assaults. There are dozens that found homes failed to “protect” a resident from abuse, but they lack detail.

The sexual assault of elderly women was the focus of a conference held last summer by the International Federation on Aging.

Greg Shaw, the federation’s spokesperson, said the topic was requested by two Liberal ministers, Laurel Broten, now the education minister and former Senior’s Minister Sophia Aggelonitis, defeated in the October election.

In her speech, Broten said that elderly women rarely report sexual abuse, often out of shame, so official statistics are likely very low.

“We need to talk about ways to increase the reporting of sexual abuse of older women,” Broten said.

“We need to start today, discussing how we can better protect and support older women in health and home care settings as well.”

In some cases, people with dementia act out sexually and require intense intervention to protect fellow residents.

Other sexual assault cases found in inspection reports include:

At Leisureworld Brampton Woods, a male resident sexually assaulted an elderly woman. The report said the same man had 18 recent encounters with other residents, all involving sexual assaults, inappropriate touching or verbal abuse. This had been going on for 10 months. The ministry found the home did not properly follow up with the man or the resident he assaulted.

Brampton Woods administrator, Janet Groux, said staff has since received extensive training on follow-up procedures and education on dementia to keep the other residents safe. The home also received special funding from the ministry for a 90-day program that gave the resident one-on-one attention.

The resident needs constant attention because in one case, when a female resident walked past him, he reached out and touched her chest, Groux said.

“This is not the way he was (in life),” she said. “Staff needed to be trained in ways to stop him because he does not know what he is doing.”

At north Toronto’s Valleyview Residence, a staff member learned that a visitor allegedly sexually assaulted a resident but the staffer didn’t report it. The employee didn’t notify anyone until the resident’s family complained about the abuse a second time.

“The staff member made a judgment call, albeit wrong looking back, and didn’t report it to the administration,” said Mike Savatovich, the home’s administrator.

Once management learned of the alleged sexual assaults, the home contacted the ministry and police, he said. The employee was retrained on recognizing and reporting abuse, and the home installed cameras in the hallways.

The Star found about 40 cases where homes delayed or didn’t bother reporting abuse to the ministry, as they are required to.

At Leisureworld Caregiving Centre – Cheltenham, on Bathurst St. near Steeles Ave. West, a staff member abused a resident then told a witness “not to tell anyone,” an inspector found.

At least two staff members knew about the assault and didn’t report it.

When management found out, it reported the assault and fired the abusive staff member, said Lisa Egan, Leisureworld’s vice-president of communications. Education was provided so that “every single person is fully trained and oriented on our zero tolerance policy when it comes to abuse,” she said.

Many employees don’t report abuse because they fear retaliation from their employers, said the president of the Service Employees International Union.

“Often the administrator tells them not to report (to the ministry), nor to the families or doctors. The administrator says the home will take care of it.

“Many of these workers are new immigrants and are sending money back home. Going to the ministry would open such a big event in their lives, they are afraid to do it.”

Analysis of inspection reports shows aggressive residents — and the homes’ ability to manage their behaviour — is a growing problem.

Dementia levels are on the rise and when elderly people suffer from dementia they can become angry, violent and sometimes overtly sexual.

Nursing home staff need special training because, for example, a worker who rushes a resident with Alzheimer’s out of bed or speaks to them brusquely can turn a routine encounter into a brutal one.

One case, at Extendicare Guildwood in Scarborough, showed that homes have to be constantly on guard to protect residents from harm.

A resident hit her roommate with a hard-plastic “wet floor” sign as the woman lay in bed.

Despite the attack, an inspector found the nursing home “failed to remove the specific object out of the resident’s area.”

The home’s cleaning staff now carries the signs with them when they are not in use, said administrator Andre Barros. The home also moved the assailant to a new room, where Barros said she gets along with her neighbours.

“We as a home try to protect our residents, that’s our top priority,” he said.

A family from Strathroy, near London, complained about a different kind of abuse.

Nancy Eaton said her husband, Brian, 69, was given a powerful drug to stop him from wandering around Strathmere Lodge.

Eaton said before her husband developed dementia he had the ability to fix anything around the house.

Like many with dementia in nursing homes, he was a wanderer who liked to tinker with clocks and furniture. Eaton said he had no problems in his previous nursing home but staff at Strathmere complained that he was aggressive.

“They didn’t take any time to get to know him. He was lost within the building, he didn’t even know where he was,” Eaton said.

Medical records from the home show he was given Haldol, an old version of the anti-psychotic drugs that were used to treat people with schizophrenia.

Two medical geriatric experts, Dr. David Conn of Baycrest and Dr. Paula Rochon of Women’s College Hospital, told the Star the drug has very serious side effects among the elderly, including Parkinson-like tremours, and is not commonly used.

Eaton said her husband had a brain seizure and now, four months later, can no longer wander around the home. He sits in his wheelchair or lies in bed.

The home’s administrator, Tony Orvidas said he has never heard that Haldol should not be given to the elderly. He refused to speak about the case, saying, “I’m not going to get into a pissing match.”

Employees did take action — amongst themselves — to stop a colleague who “cuffed” a resident in the head and was rough with another resident at Dover Cliffs nursing home in Port Dover, near Hamilton.

They did not, however, immediately tell the home’s management so the abuse was not reported to the ministry until five days later.

The abusive employee was fired and all staff members were required to be retrained on the home’s policy on zero tolerance for abuse, said Janet Ko, spokesperson for the home’s parent company, Revera Long Term Care.

The assault happened last April. Three staff heard a resident yell and asked the worker what had happened. According to the inspection report, the worker demonstrated how they “cuffed” the resident on the head.

On the same day, the worker in question was seen feeding a resident in a rough manner.

About Me

I found out that my heart was failing in October 2007 at 25 years old.

About me: I am 29, I live in NYC, and I am on a non-stop quest for healing.
I have a chronic illness called Scleroderma / Mixed Connective Tissue Disease.

The doctors believe that the Scleroderma has affected my heart causing it to be 70% covered in scar tissue. I believe my heart was damaged by a virus that went to my heart since I was on so many immunosuppresive drugs due to my underlying autoimmune disease –and my body could not fight it off.

I also have a pacemaker/defibrillator implanted in my chest.

The docs tell me there is no cure for Scleroderma. They tell me my heart condition will end in only one place: a HEART TRANSPLANT.

Mia’s Thoughts- I write a lot about my life my abuse the plight of the wheelchair using community and I really do try to help all who need it.The story above needs you needs me needs our money needs us to be registered organ donors it needs the whole community to just give for no other reason than it’s the right thing to do. I have 68,000 readers on my blog and 100,000 in europe in 150 countries and I’m asking all of you to help SAVE LAUREN thankyou.

Peter Parkes has launched action against Kangaroo Bus Lines and Martin Creek after an incident outside of the zoo during which Mr Parks and his family tried to board a bus.

Details of the action were revealed in a recent ruling by the Queensland Civil and Administrative Tribunal regarding an application by the parties to be represented during a compulsory conference.

QCAT senior member Clare Endicott, in a four page written decision, said Mr Parkes claims a bus driver had been “rude” and “humiliated” him as he attempted to board a 649 bus to take him to the Landsborough railway station.

Ms Endicott said Mr Parkes and his family had missed an earlier 615 bus, which would have taken them directly home to Maroochydore.

However, Mr Parkes opted to take another bus, the 649, which would link up with another 615 bus to take him home.

“When the 649 bus arrived, (Mr Parkes) asked the driver where the bus was going and, according to Mr Parkes, after the driver’s brief and rather unhelpful response, the bus drove off leaving Mr Parkes and his family behind,” she said.

The tribunal was told a stranger managed to stop the bus at the entrance of Australia Zoo and inform the driver Mr Parkes wanted to get on.

“Mr Parkes, who uses an electric powered wheelchair for mobility, alleges that the driver spoke to him in a rude manner and reluctantly put down the ramp to allow Mr Parkes to access the bus,” Ms Endicott said.

“(He alleges) when he left the bus … the driver said further words that humiliated (him).

“Mr Parkes complains that he was subjects to unlawful discrimination by the driver and the bus company on the basis of impairment.”

Ms Endicott did not grant the parties level to be represented at the conference.

On May 29, thirty national disability organizations lead by Not Dead Yet issued a letter to the Dr. Phil Show, criticizing its April 13th segment entitled “Deadly Consequences.” Rochester, NY (PRWEB) May 30, 2012

On May 29, thirty national disability organizations lead by Not Dead Yetissued a letter to the Dr. Phil Show, criticizing its April 13th segment entitled “Deadly Consequences.”

According to the letter, the segment “presented the idea that parents should be able to euthanize their children who have intellectual disabilities” and did so in “such an extremely unbalanced manner as to amount to a promotion of such a deadly proposition.”

National organizations signing onto the letter include ADAPT, the American Association of People with Disabilities, Autistic Self Advocacy Network, Bazelon Center for Mental Health Law, Disability Rights Education & Defense Fund, Easter Seals, National Association of the Deaf, National Disability Rights Network, Self-Advocates Becoming Empowered (SABE), The Arc of the United States United Spinal. Over sixty state and local disability organizations also joined in the letter.

The organizations call upon Phil McGraw and the Dr. Phil Show “to publicly apologize for the ‘Deadly Consequences’ segment and to give equal time to individuals with intellectual disabilities and organizations advocating their equal rights.”

“This segment was such a horrific assault on people with intellectual disabilities that ignoring it would be a dangerous mistake,” said Stephen Drake, Not Dead Yet’s research analyst. “Dr. Phil even brought in Kevorkian’s former attorney, Geoffrey Fieger, to explain why parents should be allowed to order a lethal injection for their disabled children.”

Not Dead Yet copied the letter to some of the larger advertising sponsors of the Dr. Phil Show, including XXX

On May 18, the The Arc of the United States, which is described as “the nation’s largest organization serving and advocating on behalf of people with I/DD, with a network of over 700 chapters across the country,” issued an open lettercriticizing the “Deadly Consequences” segment as well. The Arc letter asked that Dr. Phil “plan another show that would demonstrate this history, illustrating how people with severe disabilities who were previously relegated to institutions have defied all expectations.”